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BACKGROUND In the United States, an estimated 70 stillbirths occur each day, on average 25,000 each year. Research into the prevalence and causes of stillbirth is ongoing, but meanwhile, many parents suffer this devastating loss, largely in silence, due to persistent stigma and taboo; and many health providers report feeling ill equipped to support grieving(More)
The purpose of this article is to compare three qualitative approaches that can be used in health research: phenomenology, discourse analysis, and grounded theory. The authors include a model that summarizes similarities and differences among the approaches, with attention to their historical development, goals, methods, audience, and products. They then(More)
No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a(More)
PURPOSE Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association(More)
PURPOSE Little is known about the factors that influence patients' preferences for the return of incidental findings from genome sequencing. This study identified attributes of incidental findings that were important to patients and developed a discrete-choice experiment instrument to quantify patient preferences. METHODS An initial set of key attributes(More)
We have noticed calcium deposits (gastric mucosal calcinosis, or GMC) in the superficial gastric mucosa of 28 organ transplant patients (OTPs) (11 liver, seven bone marrow, four kidney, three kidney/pancreas, two heart, and one each of liver and kidney transplant) who underwent endoscopic biopsies. The deposits were tinctorially similar to cytomegalovirus(More)
BACKGROUND/AIMS This study was performed to identify primary care physicians' (PCPs) attitudes toward genetic medicine and their perceived needs for education in this area. METHODS Semistructured telephone interviews with 24 PCPs in the northwestern United States. RESULTS PCPs are interested in learning more about who should receive genetic testing and(More)
“T he irony is, if you had asked me, I probably would have consented” ( 1). So said Andrea Beleno, a plaintiff suing the Texas Department of State Health Services over its role in the use of newborn screening blood samples in research. Carletta Tilousi, a plaintiff in the Havasupai tribe’s lawsuit against the Arizona Board of Regents, expressed similar(More)
R the wave of the Human Genome Project, several companies now offer direct-to-consumer (DTC) genetic testing. Their marketing messages are built on the rhetoric of leading scientists: A person's genome is an “instruction book” (1), and deciphering it can contribute to the transformation of medicine from a reactive to a proactive science (2), in which(More)
PURPOSE Recommendations for communicating bad or serious news are based on limited evidence. This study was designed to understand patient perspectives on what patients value when oncologists communicate news of cancer recurrence. STUDY DESIGN AND METHODS Participants were 23 patients treated for a gastrointestinal cancer at a tertiary U.S. cancer center(More)